Developing Partnerships to Advance Precision Medicine with AI/AN Tribal Nations

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ABSTRACT American Indians and Alaska Natives (AIAN) are less likely to participate in longitudinal studies, in clinical trials, and in genetic testing and are a hard-to-reach population due to small overall population size and a general mistrust of science, research, and the Federal government. To meet their inclusion goals, the All of Us program (AOU) must continue to build trust with Tribal Nations. Our proposed project is developed specifically to build trust through strategies that honor key values identified by community members and Tribal leaders. One of the commitments NIH/AOU made following the Tribal consultation process is to “first engage with tribal communities through smaller pilot projects with Tribal Nations and urban and rural tribal communities and will use the information gathered to evaluate the successes and failures before scaling up any collaborations with tribes.” To help AOU meet this promise the community readiness assessment (CRA) will identify nations that are interested in pilot projects and which need greater support in capacity building to do so. A community readiness survey will be developed and pilot tested. We will work with Tribal/Community Advisors to develop and implement the survey(s), and tools and guidance in supporting capacity building efforts for Tribes/communities at lower levels of readiness. We aim to: • Establish an Advisory Council of Tribal and urban AIAN community leaders to develop and implement a Community Readiness Assessment (CRA) survey; • Provide feedback to support Tribal partners and the AOU research program to prioritize appropriate strategies for building partnerships; • Document best practices in building such partnerships; • In collaboration with the AOU Tribal Engagement Office, develop a strategic plan for long-term Tribal engagement for the program; and • Present the products/materials to the NIH Tribal Advisory Council for endorsement.